Posts Tagged ‘Being Sick Well’

Philip’s 47 year wait to breathe “easy”

I hope you are doing well in spite of the hot summer sun.  The past couple of months have been more of a struggle for me than usual, at this time of year. When I need encouraging, I often go to one of my favorite books on living withBeingSickWell chronic illness, Being Sick Well by Jeffrey H. Boyd M.D., M.P.H.  This week in the book I read the true account of a severe asthmatic named Philip Holladay.

At age two, Philip developed severe asthma.  Sometimes his mother would look at him and run from the room sobbing.  No one would explain to Philip why she did this, or talk to him about his asthma. His family cared for his basic needs, but kept him at arm’s length, neglecting him emotionally.  Throughout each day he coughed up large amounts of mucus and gasped for air so loud,  you could hear him throughout the house.   He used his inhaler frequently just to breathe for a few more minutes.  (p186)  Everyday he woke up, this young boy  was amazed that he was still alive.

One day, he made a conscious decision not to associate with his two younger brothers for fear the world would reject them, as it had rejected him.   Students shunned him or made fun of him at school.  Some adults were disgusted by his symptoms, others could not look him in the eyes.  No one  reached out to him.  He slowly retreated into his own world, immersing himself in mathematics.

“When he was fourteen, in junior high and walking from one classroom to another, he suddenly stopped breathing.  He was simply unable to gasp any more air.  Alarmed, he rushed out onto the grass, took hold of the flagpole for support, grew weak and numb, and his vision dimmed.  Within minutes he would be dead.  A thousand kids walked past this dying boy.  Everyone looked, but they all turned away from his gaze.  As Phillip was suffocating, he gave up on the human race.  He wanted nothing to do with these peopleasthma21 who did not bother to call the school nurse whose office was just fifteen feet away. Philip had always gone to church but didn’t take it seriously.  He did not know if there was an afterlife.  He hoped there wasn’t.  If there were an afterlife, he wanted to be alone, with no humans to annoy him.  Then suddenly against all odds, air poured into his lungs, Philip survived.  Perhaps his bronchial muscles simply relaxed”.  p 187

After the above incident, he gave up on humans entirely, shunned everyone, and only spoke a word or two when necessary.

At 17, Philip had decided people invented God to comfort themselves. Being a mathematician, his logical mind could not make this decision without proof, so he set out to disprove God.  He read the bible from cover to cover only to find love within its borders.

Phillip lived in a loveless world, but had now found something he wanted to be a part of.  He wanted to be capable of loving people like Jesus Christ did.  He prayed a prayer to belong to Christ and then set out on a quest to change his life.  First, he had to learn how to communicate with people, so he joined a bible study.  He watched others relate and began to take baby steps himself.  Soon, Phillip emerged as a leader.  While majoring in mathematics at North Carolina State University, he served as a youth pastor.  He earned his Ph.D. and became more active socially.

At age 26 Vanceril became available as a research drug.  It was prescribed for Phillip.  For the firstFDA-phases-out-certain-inhalers-OCDIUEA-x-large time in his life, his asthma became less severe.   He began to feel as though he might have a future after all, and began to think about dating. He soon met Georgianna, a divorced mother of three , who was not put off by his coughing and wheezing.   She had experienced  an even more difficult life than Philip.   They fell in love and married.  To this day, Georgianna is his closest friend.

At age 47, some new medications were prescribed for Philip:Singular and Pulmicort.  They revolutionized his life.  He began to breathe as if he had no asthma.  The peak airflow of his lungs doubled, and became better than that of an average healthy person.  For the first time in his life, he could breathe through his nose.  (p189)

For Philip, because of the advances  in medicine, the latter part of  life is better than the beginning. What most people take for granted is a special gift to him each day of his life:unhindered breathing without gasping, coughing and pulling up mucus. He is no longer embarrassed or fearful of dying. He has peace of mind.   Philip does not even seem to have any residual bitterness or anger because of  the difficulties he experienced growing up.  As a professor of Mathematics at Geneva College in Beaver Falls, his students have many good things to say about him.  You can read some of them here at Rate My Professor.

While there are some people that do not agree with conventional medicine, Dr. Boyd has found during the research for his book Being Sick Well, that most sick people hold conventional medicine in high regard.  For me, having medication available has been a lifesaver.  I have been on hydroxychloroquine (Plaquenil) almost 12 years.  I am very grateful that my side effects are limited and I can live a pretty full life.  I am thankful  I do not have to take steroids or anything more powerful than Plaquenil at this point.  I have also been on cabergoline (Dostinex) or some variation of it for 20 years.  Without it, I would often suffer headaches several days a week, increased lupus symptoms and hyperprolactinaemia .

Every visit now, the doctor tells me the lupus may burn itself out someday.  Unless God intervenes, I doubt much will change with the Raynaud’s, Sjogren’s Syndrome, and osteoarthritis however.  But, every so often, with his approval,  I try to cut my hydroxychloroquine (Plaquenil) dosage in half.  I usually only make it 10 days to 2 weeks.  Recently, I pushed it to a month with my symptoms increasing with each passing week.  I was a little discouraged to have to go back to full dosage, until a friend reminded me how thankful I should be for medicine that helps me.

It can be easy to lose sight of the many medical blessings we  have and focus on the health challenges instead.  Not Philip.  He is living each day with a strong awareness of how blessed he is.  His quality of life would be very different today if it were not for the many people who worked  long and hard to develop effective asthma medications.

I  believe God also has a hand in the process.  He gives people wisdom, strength, and tenacity.

He [God] changes times and seasons; he [God] deposes kings and raises up others. He [God] gives wisdom to the wise and knowledge to the discerning.   Daniel 2:21 NIV

I am thankful to God for my medications and my doctors.  I am thankful for those that work tirelessly to bring forth new lupus drugs to help those in desperate need.   I know we are far from a perfect solution, but may the work continue, and may God help each scientist.

Hopefully, one day, each lupus patient will be able to “breathe easy” with their symptoms completely under control.  God bless the medical explorers.

Many blessings to you…Leslie Rose K

 

 

 

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30 Posts of enCOURAGEment Post 28

As I begin to wrap up this series, I would like to pull together information scattered throughout my posts on encouraging yourself.  This is meant to get you thinking about what you like, what makes you happy and what could help you through a discouraging time.  Your lists will not look like mine.  You will find other resources.  I hope you will find some valuable suggestions here.

I bumped into a friend  that will have knee surgery soon.  I asked if she had help for after the surgery.  It is a wonderful thing when you need help, and friends and family gather around.  Some bring meals, others take turns driving you to appointments,  someone else helps keep the house clean, and others  cheer you up.  Then there times when you need to be encouraged and  there is no one there to encourage you.  Or, if they are there, they are unaware of the need, or unable to meetDiscouraged_thumb it.

What can we do to remedy that situation?  There are several choices we can make.

  • Give in to self-pity
  • Allow depression to take hold
  • Yield to destructive behavior such as self-medicating
  • Decide to be proactive on own behalf

It is this fourth option I want to write about today.  Whether we have lupus and/or other autoimmune diseases or not, we have all been in this situation.  I would like to share some of the things I have learned while coping with illness.

The information gathering

  • The internet has extensive information on encouragement.
  • If you are a reader, books can offer more details, examples, and Gathering-Information-How-to-Reach-Third-Parties-300x199strategies.  I highly recommend Being Sick Well by Jeffrey H Boyd M.D., M.P.H. It brings you  into the lives of others struggling with health issues and shows you how they cope.
  • Websites that pertain to your particular situation such as The Lupus Foundation of America may  help  in this area.
  • Certain TV programs offer valuable input on how we can help ourselves through different situations.   Oprah has her powerful Lifeclass weekly, which covers a variety of issues on personal growth, and freedom from emotional pain. 
  • People  have life experiences that can help us.  Small groups can be a big help.

Monitor Input

One of the biggest helps or hindrances to our frame of mind and state of emotions is input.  Everything we take in influences how weneg feel.  We need to faithfully guard ourselves against negative influences.  Just like the information in step 1 is helpful, the wrong information is harmful.  We do not want to feed on a steady diet of everything that can happen.  We want to limit exposure to people who make us feel more defeated than before we spoke to them.

Self Discovery

This is the time to figure out what encourages you, makes you happy, or gets your mind off your troubles.  To help you get some ideas here is what I have learned about myself  on this lupus journey.

  • quilting, wool applique, and doing handwork with friends has a way of shifting my attention.   It is really hard to be depressed when my hands are busy making pretty things.  See my Post A Body in Motion for more valuable information.
  • Prayer, the bible and church have lifted my spirits many times when nothing else could.  See Glazed Looks and God for more on this subject.
  • Being around uplifting family and friends does wonders to get my mind off of things.stick_figure_insert_key_black_hole_pc_800_1287
  • I have learned that proper sleep, exercise and eating right make it easier for me to stay upbeat.
  • I have learned about the crucial impact of gratitude on our frame of mind.  See A Grace Journal for more valuable information on this topic.

Action

After making our way through the first three steps, we are ready to carry out some of what we have discovered.  Unlike my friend, who has family and friends  to help her, we may have to be courageous and reach out to people.  We may have to fight guilt as we take quality time for ourselves, keeping in mind it is crucial for our well-being.   No one can do this for us.  Our emotional health impacts our physical well-being just like exercise, sleep and eating right do.  So, the next time you are feeling discouraged, decide what  you want to do to lift your spirits, and do it.  You will be happy you did.

Please read the links to the past blogs. They will give  more practical information and encouragement.  I hope you share  your thoughts with us. Thanks for stopping by.  I pray this blog is a blessing and encouragement to you.  Next time…encouraging others.

Until then,

Many blessings to you.  Leslie Rose K

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